Years ago, I began a journey of learning about, and then acting as an advocate with, the community of persons with disabilities. I began by choosing American Sign Language for college, and as I learned that ASL is not signed English, but a distinct language with its own syntax, I also learned the first step in living a life inclusive of differently-abled people is to take a good, long look at how I defined "being able."
We can't begin to truly relate to people with disabilities until we understand completely our personal ideas of success, work, timeliness, contribution, and differences. The first thing to understand and then think about is the society we live in. Different societies ascribe and value success, work, contribution and timeliness in various ways. In America, success is often defined differently for men and women, but in general success is associated with the amount of money one makes, and one's social class. American society emphasizes that hard work is equal to one's class an social status, but this is almost always never the case. The class one is born into is the most powerful determining factor in the amount of money one makes. Think of it like this: we are all set up to play a game, like Monopoly. People are given piles of money and how well they trade money for goods, work at getting more money, and save money will make some winners. At the end of the game, everyone's piles are counted. Some are congratulated, others feel embarrassed they weren't more savvy. The idea of success is connected to those piles of money.
However the game never began fairly. Some players began with twice the money, some with less then half. Those with the most, ended the game with the most. Those with the least, ended the game with the least. But without considering the game piles of money to start, we thought some were the winners. We deemed them the successful ones, and believed their personal talents, wit, and abilities made them a success.
In order to begin working at a School for the Deaf, I had to understand the societal norms about ability. I had to unlearn the idea that the amount of hard work equaled success and personal value. Once I did, I was ready to understand I wasn't at a School for the Deaf to help them because I could hear and they could not; I was at a School for the Deaf and learning American Sign Language because I understood and recognized I was working with exceptional people, exceptional learners.
As my college years progressed, so did my involvement with the community of persons with disabilities. The Americans With Disabilities Act -- an incredible, wonderful civil rights amendment of enormous proportions that President Reagan quietly passed into law -- radically changed the way we would include differently-able persons in all aspects of society. As I read books on tape for fellow students who were blind, I watched sidewalks be built and ramps installed. I watched as students with disabilities were given quiet environments for taking tests, and twice the amount of time. I watched as slowly more and more courses were offered online, to be taken entirely from home. I watched as tape recorders were given to students to record lectures, to listen again from home.
So much different from the frightening "main-streaming" of the disabled during the 1970's when exceptional learners and children with disabilities were put into mainstream classrooms where they were not seen as "different but equal" but were seen as different and less than, pitied, not given fair accommodation. I recall with deep sorrow the sweet child who appeared one day in our 6th grade class. He had MS, and little control of his muscles and speech, especially under stress. Our teacher, Mr. Hellwege, often picked on him. One day he told our fellow student with MS to sit still and stop disturbing the class. Of course, this was impossible. When the student didn't miraculously gain control of his MS, Mr. Hellwege made him sit at his desk, in front of the class, on his lap. He told the student he was a "baby" because of how he held his arms and wiggled his body, and that "babies sit on laps." I couldn't have been the only student who cried then, along with the child sitting in humiliation on Mr. Hellwege's lap. The next day my classmate was gone, and although issues often weren't discussed openly back then as they are now, I like to think his and many other outraged parents openly confronted the school and demanded an end to this abuse. And today I ask, with all the love of justice, should it not have been the teacher, not the student, who was made never to return? Exceptional learners were not included as a part of the class; rather, they were outcast for their presence, and discriminated against systematically and structurally. But the ADA changed all that as it defined the right to accommodation as well as inclusivity.
Accomodation. Inclusivity. What does that mean? How does one accommodate persons with disabilities? I wanted to know. And as my university an community work as a disability advocate grew, the answers did too. I began giving college lectures and teaching courses on creating inclusivity and building a diverse community. I carried buttons and stickers that said "People with Disabilities Can Do!" and gave them out freely, along with helpful little written booklets about the ADA. Now, years later, as part of a wonderful jewelry and bead artists community, I'd like to again discuss disabilities and share some of what I've learned. As the issue of diversity and helping artists with disabilities (which include diseases) arises, two areas seem especially important to address: accommodation and support -- or essentially, in other words: fundraisers and events.
Accommodation does not mean pity. I have found a key difference in including artists with disabilities in the jewelry an bead arts community is respect vs. pity. Elenore Roosevelt said, "Pity is the deadliest thing you can give a woman" and it just as negating to give the differently-abled pity. When coming across persons who assert that I must give my pity as a means of support; or that by joining groups to see persons with disabilities as victims of circumstance, hard knocks, or terrible suffering that I can choose save or help , I quickly turn the other way. Giving direct money, focusing on limitations, feeling sorry for, and rescuing a disabled person is not in any way equal to nor as powerful as giving access, opportunity, empathy, and support. Yes, disabilities may be painful, expensive, and disempowering but the job of learning to love oneself, finding access to medical care and financial resources, and participating a support group with others who have the same disability (or disease) is the responsibility of the differently-abled themselves. A person with a disability surrounded by able-bodied persons who are there to "help or rescue" is not accommodation. In fact, it is the same way of thinking of and seeing differently-abled people that allowed Mr. Helwege to abuse the exceptional learner of his class: seeing the disabled as "less than" and in need of help is rooted in inequality and prejudice.
Look again at the picture at the top of this post. You may be thinking, "Gee, you're kinda tough on that little girl in the wheelchair," but I am the little girl in the wheelchair. As you thought of me being a disablitity advocate, teaching at the School for the Deaf, becoming an ASL interpreter, reading for the blind, teaching classes and giving university lectures on including and accommodating persons with disabilities, and then refusing to "help" persons asking for my pity, you may have imagined I was able bodied. Yet I've live my life differently-abled, often from a wheelchair, and do so very happily, even with some very intense medical challenges, chronic severe pain, and physically limitations.
So accommodation is not pitying, rescuing, nor even simply perceiving people with disabilities as down on their luck. What about fundraisers then?
Let's talk about money. In American society it is considered more rude to talk about someone's income than it is to discuss sex. The taboos about money make it challenging to discuss money, disease, and disability, but let's just jump in bravely and start right there. Supporting persons with disabilities does not mean directly giving them money out of pity. Does this mean not participating in and giving financially to "fundraisers" in the jewelry community? Yes and no.
There are important issues to look at before giving time, money, and your jewelry to such events. Firstly, find out if the fundraiser is being hosted for or by a Not-For-Profit organization or group. If it is the case of a private fundraiser, check to make certain the recipient has not received monies before. An emergency is not an emergency if it happens again and again. While someone might be faced with unexpected illness and need community support, make sure that it isn't a pattern. Persons with disabilities are responsible and capable people who are in charge of and care for their own wellness long term, and it is unlikely they would have repeated medical emergencies. While disabilities are often long term, a disability can also be temporary and short term, such as a broken leg or broken arm. Giving money to someone with chronic long term health challenges who also claim to have short term medical conditions is not at all the norm. While the jewelry arts community is known for being amazingly supportive and has helped incredible artists like Andrew Thornton survive skin cancer, repeated fundraisers for consecutive life threatening illnesses is unusual. Caring for and living with a disability in the long run means seeking out and setting up long term resources for one own self.
Ask questions. Reputable fundraisers will welcome your questions. If you are met with defensiveness, or come across tales of others simply not liking the person with a disability, or see evidence of "us vs. them" mentality, run. Reputable fundraisers don't divide the community. There is no talk of "us vs. them" to try to manipulate participation. If you find the fundraiser has a division between those who give without question (the "good" people) and those who ask questions (the "bad" people), run faster. Instead, share your love, money, and jewelry and bead art with organizations (or events supporting such organizations) that have tax IDs and are non-profit.
And finally, don't be mislead by ethnocentrism. Now that the internet makes our communities global, don't make the mistake of thinking resources for quality healthcare and programs for the disabled are non-existent in other countries. Do a little research. Medical specialists of fine reputation and programs for persons with disabilities do indeed exist outside of the USA.
Consider supporting and contributing to the Beads of Courage event on November 10th. There will be an art charm auction to benefit Beads of Courage.
If you organize blog hops and special events, consider trying out a sliding fee scale. If our goal is to create a diverse, inclusive community that includes persons with disabilities, one way to accommodate the differently -abled and to encourage participation is through fees. If you sell bead kits for a blog hop, for example, think of your usual fee to cover mailing costs an supplies. Sell some kits for more than that price and some for less, creating a "sliding fee scale." This way persons with a little extra to give have a great way to do so, while those on fixed income are not excluded. Don't be afraid to ask those requesting reduced fees to apply for them. While a person with a disability may be marginalized because of fixed income due to their being disabled -- something beyond their control -- you don't have to offer sliding fee scales to anyone and everyone in need, for example, someone who just paid for a great deal of dental care. It's ok to ask for proof of disability, such as a Social Security award letter with ss number and type of disability blacked out, in exchange for a sliding participation fee.
A great way to create diverse community and to include differently-abled artists in events such as blog hops is to give accommodations of time. For many persons with disabilities, time is an issue. Whether a blind student going to a college class or a jewelry artist with Fibro commenting on numerous posts in a blog hop, time can be the means of exclusion or the key to inclusion. According to the ADA, our job is to create access to events, shops, schools, etc. Imagine the differences in time for an able student simply driving to class and person walking to a bus stop, riding the bus, and then walking to a destination. Or imagine having the flu and no energy, and consider how feeling that way every day might make a blog hop challenging. Yet, norms in our society often define "being on time" as not only important, but imperative and a matter of respect. Successful persons are "timely." Yet, if we are inclusive to artists with disabilities, giving enough time to join in and making an effort to see time through their eyes can make all the difference.
Thinking differently about "being on time" is a wonderful accommodation. For example, the "Jewel School Friends" often had jewelry making challenges with themes. Because two people in the core group were differently-abled, the Jewel School Friends jewelry challenge group learned that in order to accommodate them, it was best to set a day for posting, rather than a time. That way, if an artist with an auto-immune disease needed to rest in order to prevent their body from becoming too worn down (and then causing a fibro flare) after creating and photographing jewelry, they could. It was ok to post after they rested in the evening, and they needed not explain. They simply posted any time during the day of the reveal, by midnight their time. Yet, in a typical blog hop (with midnight to 3 A.M. being a traditional post time -- or better yet, even earlier with a scheduled post ;), the differently abled artists' contribution would have been considered more than a day late! But with our time accommodations, the artist had the experience and pride of being "on time" and successful at posting. This kind of flexible scheduling was less stressful too, another accommodation.
With regard to commenting on posts, Jewel School Friends made the expectation to begin commenting the day after posting, and complete comments within one week. And what if someone hadn't said a word about a post within a week? Well, then it might be assumed they didn't quite care for the design .... Participation was strong, and the number of comments was high because a generous and flexible amount of time was an inherent part of the jewelry making event.
According to the typical norms for blog hops, I was horribly, unforgivably late to my own October Fest blog hop and failed completely at commenting. And the guilt and worry I felt about posting at 8:30 P. instead of 8:30 A.M weighed heavy on me with shame. For the sake of this article on jewelry artists with disabilities, I'm going to share about my disability and why I posted at 8:30 P.M, but in doing so, I would love to suggest that no one need explain again a late reveal if we simply make blog hops "all day postings" with comments expected to begin the next day. By doing so, we provide accommodations for artists with disabilities (there are many!) and make it possible for those artists to participate with pride.
Although I don't usually discuss in detail my disability -- not that I judge others who do feel comfortable doing so -- I made a change this year because of the Global Genes Project. I received a bracelet, and agreed to share about my disease and the project openly. I have Crohn's and Vernuil's Disease, and my Vernuil's disease autoimmune flares are abscessed lesions across my underarms, breasts, bottom, unmentionables, and groin that cause excruciating pressure and severe chronic pain, fistula (tunnels within the lesions that connect one abscess to another abscess), and exhaustion. My daughter's sudden death in July has exacerbated the diseases, and for the first time ever in my many years living with the diseases, I've been being hit by multiple flares in multiple areas at once! It is intense. Thus, posting while having flares meant sharing by 8PM -- indeed sharing at all -- was a miracle. Commenting will definitely take me a good week.
Some persons have insisted, "if you can't participate, then don't" but imagine a life without creativity? In that case, we are right back to the child with MS being removed from school. Rather than excluding persons with disabilities, isn't it better to consciously seek out and include them, to be diverse, to share and learn from many perspectives and celebrate all kinds of jewelry and bead art and design?
I'll be participating in Sue Bead's upcoming blog hop for the Global Genes Project, and as I promised GGP, I'll be sharing more about my disability and living with rare disease. For now, I hope this article has you thinking, fosters diversity, and opens up a discussion. And please, look for my October Fest comments on your amazing blog reveals -- coming soon! ;)